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Tuesday, April 23, 2013

It is a beautiful painting that seems
at first serene, but as one looks upon it more deeply there is an undercurrent
of stress. It is the jacket
painting of Gina Neff. The title
is “Under Pressure. “ I painted
this painting under a deadline. I
would be giving it to Gina at the Health Foo gathering in Boston that
evening. I painted while listening
to an NPR report an ever-widening lock down in Boston. There was a manhunt for the two
fugitives who were believed to be behind the Boston Marathon bombing several
days before.

So I painted blood where it should not be. Gushing in the park.

Gina Neff suffered from preeclampsia when her twin boys were
born. Her blood pressure was
dangerously high after the births and did not return to normal levels for weeks
afterward. There was a danger she
would have chronic severely elevated high blood pressure whilst caring for twin
newborns. So she is painted with
the stress of pushing two carriages while her blood pounds within her.

Then normality returned to Gina’s life. One day her heart calmed and the world
continued.

As I put the finishing touches on this painting, I listened
to the growing tension in Boston.
I checked my email to see if the Health Foo event was still on. It was still a go, so I threw my
clothes in one bag and threw my paints into another. I then received an email from my friend Susannah Fox who was
also going. I was supposed to room
with her that night. She wrote to
say she had re-booked her flight for the following morning. Okay, I thought.
Now, I had no place to stay.
Hopefully, the hotel would have spare rooms. I lugged my bags to the curb and hailed a cab. Then I called my friend Ted Eytan. He assured me he was still going,
so I responded if the two of us were going to be there, the conference would go
on.

When I landed in Boston I checked my email to see that event
had been cancelled due to the continued lock down. I waited for Ted’s plane to land and followed the tweet
stream for #healthfoo. Danielle Cass had just flown in from California and did not relish the idea of heading
right back. When Ted landed we both encouraged Danielle to stay as no matter what. This event should not be derailed.

That evening the remaining members of Health Foo met at the
Royal Sonesta Hotel for light refreshments and drinks. I walked over to Gina Neff and handed
over her new gallery jacket and was told I could room with her that night. What amazing friends we have within the
world of health and social media!
Soon Sara Winge VP of O’Reilly Radar group and co-founder of Foo Camp
came carrying her sorrow and a box of books for attendees. The other materials were locked up
inside our closed venue. We had no
nametags, no markers and none of the supplies to rebuild an event from the
ground up

That did not stop us.

We borrowed a white board from the hotel and began to plan
the next day’s event. Sara got us
started with a few words. Then we
did the traditional introductions of each attendee around the room. We decided that the next day we would
begin by having brunch. Then we
would walk around Boston for a few hours as a Walking Foo (or Walking
meeting). Then we would meet
around 2 and hopefully have a venue by then. Several local attendees would ask around to try to find a
place that would allow us to meet with no notice. We would communicate the real time status of the event on
Twitter, Facebook and through texts and anyone who wanted to join us was
invited!!

Next we proposed session topics. We filled the unconference board and decided to present a
few ignite speeches without slides. Danielle Cass’s speech about work life
balance and her new role at Kaiser Permanente was a type of catharsis for her
and many other struggling souls in that room. She was brilliant.
Our unconference sessions continued until Sara told us the hotel needed
the room back and then our excited conversations continued in the hotel lobby
well past mid-night.

The next day was Saturday and the Health Foo group split
into two parts, some of us eating brunch at Friendly’s and some at Area Four on
Main Street.

Very soon each group
set out walking. We were blessed
to have 15-year-old Abigail Boone in our group. As her father Keith Boone was willing
to let her walk with us while he was in the other group.

We came across the make shift memorial
for the fallen MIT officer. As we
stood there taking photos, Abigail drew a small picture and laid it down as a gift
upon the growing mound of flowers.
Then we walked away.

We walked as octopus navigates the ocean floor, our form
changing and reforming. I would
talk with Ted, then Hugh, then Danielle Cass, then Danielle Gould, then Chach and then Abigail... Abigail is a student studying forestry and as she walked
beside me she explained the growth of calluses on trees and pointed to ‘cancer’
on a trunk. I walked in awe beside
her. I learned so much from a
15-year-old girl who would have never talked with me if this had been a
traditional Health Foo.

Soon we met with the other group coordinating via twitter
and Google maps. Anna Young from
Little Devices told us she thought she could get us into a space at MIT. We walked over to the new space. It was perfect! We filled out another unconference
planning board Fred Trotter took charge of this process and was amazing. I attended Ted
Eytan’s session on transgender experiences and I began to paint.

This is the painting “The Open Door.”

This is the Boston I saw upon arrival: the streets devoid of
cars and the buildings in lock down.
Then the campers begin to walk upon the street as it buckles and bends
in a crazy life ride. In the distance there is an open door on a building
marked MIT.
One walker holds a transgender hula-hoop. A hula-hoop is toy that is only enjoyed while in constant
motion. Always recalibrating to keep it up. I thought it a good metaphor for the constant frustrations
of the transgender patient seeking medical care and respect.

Soon Hugh Montgomery would talk with us about climate, global
warming and the power of wind energy, explaining that if Tylenol would just
become available in smaller milligram tablets it would save energy in
manufacture.

I began to paint the police tape that littered the ground as
we walked earlier that day. It had
joined the piles of windblown trash that made Abigail so sad as she saw the
waste of our industrial world overlaying the roots of her beloved trees. We then talked about the future of
education and a little red schoolhouse entered the picture. Soon it was 6:00pm and time to wrap up
this conference day. I went to
dinner with Ian Eslick and several other amazing campers and we talked about
programming code a good part of the evening.

The next day I met Ted for breakfast and happily looked back
on the weekend thus far. We were so glad that we had been able to encourage
others to embrace the failure of a plan and build something great from the remains. I told Ted, this wasn’t that hard for a
patient to do; after all, we have nothing upon entering the world of care. We have no space to call our own;
we constantly must move, never sure where we will end up next. A Health Foo unconference created on
the go was nothing new to the patient and family caregiver; it was the care
model as we knew

it.

Soon Ted and I met the small Sunday morning crowd at
MIT. Ted proposed a session to
teach those who did not know how to tweet the wonders of twitter. Ted took Hugh Montgomery under his wing
and I began explaining Twitter to Gorden Bell. He then showed me his self-tracking devices, which I
tweeted out to the world. By the time an hour had past both gentleman were
sending tweets and following accounts.

I returned to my painting and painted two young men building
a go-kart on the left of the painting just as they were doing in the left of
the room. Then I
participated in a final session on the importance of tracking heart rate
variability. The session was
presented by an engineer and given to two doctors, another engineer and to this
artist who only attained a high school degree.

That was pure Health Foo.

You see Health Foo brings us together: the smart techie, the
artist, the doctor, the designer.
In this moment we are all equal. We are all valued and from each of our
singular natures we make a greater whole.

So I signed this piece and gave it to Anna Young for her
willingness to host us inside her maker space. She was so happy she began to cry. Her whole face beamed with joy. Her blue eyes were an endless sparkling chasm; an open
door. For when Anna unlocked the
door to MIT that day she created a moment of communion and we are all greater
for it.

As my friend Ted has said, It is the greatest cancelled
event I have ever attended. It was
an amazing weekend. It was a
moment to recharge the batteries of so many of us who after weeks or months of
travel and teaching needed to feel the embrace of great friends and agile
minds.

We found in this gathering the peace that Gina found in her
post partum home. We found the
peace that I hope Boston will find as well. Our hearts calmed and the world continued.

Gregory Downing and Lygeia Riccardi brought to my attention that scholorships were now available for this event so we are no longer having a flash mob walk at Health Data Palooza. Instead apply for a scholarship and attend and walk if you are inspired to walk and chat if you are inspired to chat.

For the past two years The Walking Gallery gathered in the
Kaiser Permanente Center for Total Health. It was a great venue for the
first two years. Thank you Kaiser
Permanente for your gracious support! The first year we had 54 Walkers
wearing their jackets. The second year we had over 80.

In our third gathering I hope to see over 100 Walkers and
many additional guests. I attended
quite a few conferences this past year where thought leaders in medicine
wondered how to activate regular people within their communities. I also
attended a lot of conferences hosted within nice governmental buildings or
grand hotels; those individuals running these meetings asked how we could
involve people of faith and places of worship in the larger dialog of patient
rights and engagement.

So… The Walking Gallery 3 will be held in St. Paul’s Lutheran
Church in Northwest DC one block from the Mural 73 Cents. My younger son was baptized in this
Church and we held my husband’s memorial service here. The school beside the Church is Murch
Elementary. Both my son’s attended
this school and I have volunteered there to help with many art projects in the
last nine years. I am so glad to
welcome the world of medical advocacy into our local community.

We will gather
at June 2nd, 7:00pm have light refreshments. We will share our stories. At 8:30 we will walk across the street
and re-dedicate the mural 73 Cents.
It will be a Blast!!! This will also give us a moment to recharge and
reflect on why we care so very much about patients and positive change in
healthcare.

In case any of you wondered why we have our biggest gathering
in the beginning of June each year, it is because we host it right before the
first day of Health Data Palooza since so many like minded folks would like to
attend both events.

The Walking Gallery: Mini- Documentary

Finally, I began a new Medstartr campaign
to fund a mini-documentary of the Walking Gallery Movement. These funds will pay the amazing
film-makers for Eidolon Films: Tessa Moran and Ben Crosbie as they create a piece that will include
interviews with walkers, conversations with artists and explain the technical
process of creating a gallery jacket.

Thank you everyone who can
support these amazing causes!
Onward and Upward!

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."